By Steve Holmes 

Stage 4 Patient Survivor

To beat cancer, you must first get alongside it. Learn its ways. Understand its nature. Then, use that knowledge to outmaneuver it. By breaking it down into smaller, more manageable pieces, we strip away complexity and fear. This better equips and empowers patients to more effectively understand, engage with, and respond to their diagnosis—because survival isn’t just about treatment. It’s about how you respond.

The interview below is a reconfigured version of a live video discussion with Servier, a global pharmaceutical company committed to improving patient experiences in hard-to-treat cancers. Conducted in support of World Cholangiocarcinoma Day (20th February 2025) and our Light Australia Green Initiative, this conversation also coincides with the upcoming rollout of Servier’s SHAPE program—a patient-driven initiative designed to bridge critical gaps in response strategies, early genetic testing, and accessible resources.

Visit our Light Australia Green Facebook Group to see the landmarks and stories, or our Light Australia Green website page.

Servier, a global pharmaceutical company founded in 1954 by Jacques Servier in Orléans, France, has evolved into a patient-centric organisation committed to therapeutic progress. Initially a small enterprise with nine employees, it has since expanded to over 150 countries, employing approximately 21,900 individuals worldwide.

In January 2025, Servier’s European film crew conducted an online interview with both Claire and me, focusing on my journey as a Stage 4 cholangiocarcinoma survivor. This interview is part of the activities leading up to World Cholangiocarcinoma Day (20th February 2025) and aligns with our ‘Light Australia Green’ initiative.

This collaboration underscores the shared commitment of Cholangiocarcinoma Foundation Australia and Servier to address patients’ unmet needs, particularly in hard-to-treat cancers. Servier’s SHAPE program (Support Harmonized Advances for better Patient Experience) exemplifies this dedication by co-creating tools with patients, caregivers, and healthcare professionals to provide critical support for those facing cholangiocarcinoma (CCA).

The SHAPE CCA Workshop held in May 2024 brought together patients, caregivers, and oncology specialists to identify key challenges—such as delayed diagnosis, a lack of specialist knowledge among healthcare providers, and the emotional and logistical burdens of navigating this disease. As a result, Servier is co-developing an informational resource to address these gaps—covering early genetic testing, nutritional support, mental resilience, treatment pathways, clinical trials, and expert referral networks.

To ensure broad accessibility, the resource will be available in a hybrid digital and hardcopy format, with strategic distribution through oncologists, patient organisations, and advocacy networks to maximize reach and impact.

By participating in this interview, we aim to elevate awareness, strengthen patient and caregiver support networks, and advocate for a more proactive response to cholangiocarcinoma. Servier’s evolving patient-first approach aligns closely with our foundation’s mission to empower patients and caregivers—ensuring they have the tools, knowledge, and strategic response needed to navigate their journey with clarity and resilience.

“Because a thing seems difficult, do not think it impossible.” – Marcus Aurelius

“Survival is deliberate, creative persistence—fueled by an unyielding will. Some call that luck. But luck is just what happens when persistence meets perseverance. A simple concept—difficult in practice. But if you remain open to such thinking, opportunity will always find its way to you.” – Steve H.

January 2025:

Interview begins: 

Servier:

Steve Holmes was diagnosed with late-stage cholangiocarcinoma—a cancer with no early detection, no effective treatment options, and no cure outside of surgery. With limited options and a rapidly declining condition, Steve faced a stark reality:

He had seen cholangiocarcinoma take his younger brother just two years earlier. He knew survival wouldn’t come from simply receiving the standard of care—it would have to come from something more.

That began with how he would respond.

But this wasn’t about an all-out fight. Not this time.

“After my brother Graeme’s effort, I knew I couldn’t win in a head-on battle. That approach exhausted me of the precious energy I needed. Instead, I had to get alongside this cancer—to walk alongside it, to study it, to learn its ways.

I had to either cut a deal with this seemingly unbeatable cancer or seize on an opportunity to break it grip on me.

Either way, I knew one thing:

I had to understand this beast. Or perish as my brother had.”

In this interview, Steve shares how he developed the Optimal Patient Response (OPR) strategy, why bile health matters, and what every newly diagnosed patient needs to know.

---

Q1: Steve, can you tell us about your journey and what led you to co-found the Cholangiocarcinoma Foundation Australia?

Steve:

I didn’t set out to start a foundation. I set out to survive.

Stage 4 cholangiocarcinoma—no manual, no roadmap, no second chances.

When you’re diagnosed with this cancer, you’re not looking for “care.” You’re looking for a strategy. A way to beat it. But what I found was a health system locked in a care-based culture.

Cholangiocarcinoma has no early detection. No meaningful treatment options. No cure outside of surgery. And even then—only 15% qualify for surgery, with an 85% recurrence rate.

Do the math. That’s just 2.5% chance of surviving five years post-surgery.

Here’s the truth: You don’t beat this cancer by simply following the standard of care. You have to take risks.

I needed a strategy beyond ‘standard of care’ to outmaneuver those odds.

I’m naturally curious. And I cycle—a lot. That’s what ignited my possibilities and as it transpired – opportunities happened. I met a surgeon and then a little later an oncologist who thought like me—fellow cyclists, naturally curious, persistent in nature and willing to explore beyond care.

So in two different settings, I was able to seize on a possibility that I would not have otherwise not seen. Each helped me to the net stepping stone where I could see now possibilities and response strategies. High-risk. All this was outside or beyond the conventional standard of care, all were unproven. But necessary.

While I didn’t know if these strategies would work—in fact, they didn’t—each still provided a stepping stone to the next. These stepping stones of effort became the seed of what would later be named the Optimal Patient Response (OPR).

And in turn, OPR triggered the formation of the Cholangiocarcinoma Foundation Australia.

Because we learned that survival isn’t just about the treatment you receive. It’s about how you see, understand, and choose to respond to your diagnosis.

And that’s what’s missing in the clinical setting.

A cancer diagnosis is the first time your team comes together. But teams don’t win without a strategy and a strategy needs coaches and players who are all in sync. Right now, in clinical settings, that’s missing, and that is where our focus must be.

---

Q2: Steve, Tell Us About the Foundation—Its Objectives, and What Makes It Unique?

Steve:

The Cholangiocarcinoma Foundation Australia wasn’t something we planned—it was something that became necessary.

Because there was a massive gap. When I began, there were no established first-line treatment options, no central patient community, and no baseline knowledge to help patients understand or take action.

We weren’t just lacking treatments—we had no way of knowing how to respond effectively.

Most cancer organizations focus on awareness, research, and treatment funding—all essential.
But very few lead from the patient coalface itself, where the absolute intricacies of survival are fully understood—where survival is actually determined.

Our foundation had to be different—it had to be effective at the coalface of this battle. It had to be represented at every level—from patients and families to research, healthcare, and policy. It had to ensure that today’s and tomorrow’s cutting-edge science and advancements actually reached patients and their clinicians in a way that benefited them now, not years down the track.

That meant it needed to be:

✅ Patient-led and patient-centred
✅ Professional and proficient in science, healthcare, and best practice
✅ Built to actively drive survival response strategies and processes through the patient lens—not just talk about them
✅ Transform the care culture into a response culture
✅ Innovate—lead research from the patient’s perspective, ensuring it translates to real-world survival outcomes

That’s What Sets Us Apart.

We are a uniquely patient-led cancer research and advocacy organisation, with deep expertise in cholangiocarcinoma and other bile-related cancers like liver, gallbladder, and pancreatic cancers.

That means we ensure science doesn’t just sit in research journals—it reaches today’s patient toolkit.

But we don’t just talk about survival and cures—we initiate, innovate, lead, and build strategies and processes to make them possible.

✔ We put patients in the co-pilot’s seat.
✔ We embed lived experience and expertise into medical decision-making.
✔ We build bridges between patients, researchers, and clinicians.
✔ We surround ourselves with people of talent, expertise, and great character—not just care.

This isn’t just about fighting a disease.
It’s about leading a response culture that outpaces it.

And we know this: Success is built on the right people.

We know that great character amplifies talent and outcomes.
We bring in those who share the vision and have the ability to lift it to new realities.

Because patients don’t just need treatments.
They need strategies.

And That’s Why Our Foundation Exists.

Our Core Mission: A Patient-Led, Research-Driven Model

With no cure, limited treatment options, and a 5-year survival rate of only 5%, we can’t rely on treatment alone.

Patients must lead with responsibility. And we must provide the pathway and means for them to achieve this.

We must set and lead the culture—rising above our pain, leading by example, and being proactive co-pilots, not passive passengers.

By doing so, we inspire the scientists and healthcare professionals who work tirelessly for our survival.

Our response shapes the future of their efforts—and how we respond to this disease.

Because when we simplify, we understand.
When we understand, we engage.
When we engage, we respond effectively.
And when we respond effectively, we improve survival outcomes.

Key Focus Areas

1. Optimal Patient Response (OPR): A Blueprint for Survival

We embed patient response strategies and processes into and beyond the clinical setting.

✔ Patient Navigator Journal Series – Breaks down the cancer journey into actionable steps.
✔ Mutational Translator – Simplifies complex genetic data into patient-friendly language, increasing engagement.
✔ Patient-Endorsed Medical Registry – Connects patients with high-flow cholangiocarcinoma expertise and experience.
✔ Second Opinion Project – Ensures patients can efficiently connect with medical professionals who have the expertise and experience to match their specific diagnosis.
✔ NGS Integration – Ensuring Next-Generation Sequencing is at the heart of patient response, expanding patient options from the point of diagnosis, increasing engagement, and making precision medicine & clinical trials more accessible.

2. Bile Health Research: Investigating the Root Cause

✔ Supporting and funding research into toxic bile conditions as a precursor to bile-related cancers.
✔ Developing early detection and proactive intervention strategies.

3. Building a Focused, Professional Community

✔ Blending expertise from patients, researchers, and clinicians to create comprehensive response networks.
✔ Professionalising the patient and caregiver contribution to healthcare.
✔ Serving as a model for other cancer types worldwide.

The Challenge We’re Fighting

Cholangiocarcinoma is at the centre of a worsening health crisis, with cases rising by 60% in the past decade—and increasingly affecting younger Australians (ages 30-50).

This aggressive cancer offers no meaningful treatments beyond surgery—which is only an option for 15% of patients—and 85% of them experience recurrence.

For most patients, the disease becomes metastatic.
Survival rates quickly reduce to 2.5%.
Overall survival remains stuck between 3-7%.

This urgent challenge demands real solutions—not just awareness.

We’re here to lead that change and inspire those who have the talent and experience to help improve survival faster.

---

Q3: Steve, You Mentioned An Unexpected Responsibility – Could you Elaborate?

Steve:

I hadn’t just survived—I became one of the first to survive from a late-stage setting. And in that moment, I realized: I now had an unexpected responsibility.

I endured 25 hours of invasive, multi-organ surgeries. A near-fatal hepatic artery aneurysm. A failed clinical trial that tested me beyond what I thought I could endure. And when the cancer returned aggressively, I was offered a highly speculative, unproven Phase 2 clinical trial—one that wasn’t even available when I began my response.

It wasn’t a difficult decision. Because there was nothing else. I was declining fast. A tiny window of opportunity had opened.

I had already seen this cancer defeat my younger brother just two years earlier. The decision to pull the trigger was easy.

I had never heard the term NGS: Next-Generation Sequencing or molecular profiling—a process where they examine a small piece of the tumor to see what it’s made of, what’s wrong, and what mutations are driving its growth. What was truly remarkable? They could match those mutations to precision immunotherapy drugs—targeting exactly what they found.

That trial saved my life.

It wasn’t luck. It was rooted in who I am.

I learned that I truly did have an open mind and a willing personality. It kept the lights on, even in my darkest moments—allowing opportunity to always find its way back to me.

And because I was so focused on each step, on doing it well, the overwhelming weight of this seemingly unbeatable cancer never distracted me from what I needed to do.

It became the right opportunity and the right response at the right time.

And that’s why I co-founded Cholangiocarcinoma Foundation Australia.

Because patients don’t just need treatment.
They need response strategies from the moment of diagnosis.

Together with my wife, and caregiver, Claire, we built what was missing at the coalface of this deadly battle.

We created a patient-led research and advocacy model.
We structured and professionalized the patient and caregiver response.

Because true progress doesn’t happen in isolation.

For medical advancements to make a real impact, they must reach and benefit today’s patients—today.

And for that to become a reality, we needed to educate patients, their caregivers, and their families.

Q4: Why is Next-Generation Sequencing (NGS) such a priority in patient response?

Steve:

Because the data changes everything.

A biopsy isn’t just a tissue sample—it’s a window into the enemy. It tells us what the tumor is made of, what mutations are driving it, and—most critically—whether it matches a cutting-edge treatment or clinical trial that could save a life.

For a cholangiocarcinoma patient, this is where the opportunities are. This isn’t an afterthought. This should be embraced from the moment of diagnosis.

And yet—NGS isn’t standard practice.

Cholangiocarcinoma has no curative options. NGS expands those options. It’s not a luxury. It’s not a bonus. It’s an absolute priority.

In the end, it was the only way I survived.

But let’s be clear: Survival isn’t a single step. It’s not just “get the right treatment” and live. It’s a series of steps—each critical, each necessary, each the difference between life and death.

At the core of Optimal Patient Response (OPR) is a simple principle: Break the response down into small, understandable pieces. Achievable steps. Make it to the next step. Do it well. Then move forward.

The alternative? Get overwhelmed. Collapse under the weight of the whole fight. And lose.

This strategy kept me focused on what I could control. It kept me moving. It allowed me to function at higher levels—even when I was weak, even when I could barely move. And ultimately, it gave me the best chance to reach a trial that wasn’t even available when I began my response.

That’s the reality of cancer.
That’s how you respond to it.

Because you don’t just need treatment—you need a strategy.

NGS isn’t just a test—it’s the bridge. The bridge between outdated treatments and potentially life-saving options that haven’t yet become mainstream.

It unlocks precision medicine, clinical trials, and breakthrough therapies that most patients don’t even know exist.

And yet—too many patients are never told about it.
Too many doctors dismiss it or cling to a flawed ‘wait-and-see’ approach.
And in that hesitation, the power of this window closes quickly.
Too many opportunities are lost.

That’s unacceptable.

We push for NGS as a baseline priority in a response strategy—so it’s integrated from the start, not as a last resort. Because assumptions cost lives. And wasted time is time we don’t get back.

The Guiding Principle of OPR:

Simplification → Increases Understanding
Understanding → Increases Engagement
Engagement → Enhances Effective Response
Effective Response → Improves Survival Outcomes

This is how we make clinical trials more accessible.
This is how we give patients a greater fighting chance.

Because the standard of care isn’t a strategy in a cancer that outpaces it.
A deliberate, creatively persistent response strategy is.

Hope is real. It is a strategy.

I believe NGS provides real hope to patients—not just as an idea, but as a strategy to move beyond the conventional approach. It opens doors to new possibilities, new opportunities—each one translating into a greater chance of survival.

---

Q5: Steve, You Talk About ‘Response’ A Lot—Can You Explain?

Steve:

Because response is everything. It is a culture.

A cancer diagnosis is not a passive event. It demands action, strategy, and execution.

Right now, the culture is built around care. First-line standards of care exist for a reason—yes, care is important, and it should be baked in at every step.

But care has also become the default—an excuse to avoid reaching, taking risks, or pushing for more.

I believe that an entrenched care culture weakens the patient’s capacity to rise above their diagnosis—to become the best patient and co-pilot they can be.

Look at the survivors of this cancer. The common denominator among them?

They embraced and optimized a response culture.

If every patient were to adopt this mindset, the healthcare system would initially feel uncomfortable—pushed beyond its default settings.

But discomfort is growth.

At first, it would feel awkward. Pressured.

But soon? It would become the new normal.

With cholangiocarcinoma—and all bile-related cancers—survival demands more than care. It demands response.

Because care happens to you. Response is something you do.

Cholangiocarcinoma moves too fast for a ‘wait and see’ approach. You don’t have time for passivity. You need a deliberate plan—one that exceeds passive care and demands action.

It’s not just about treatment. It’s about how you respond.

Response is a culture, a strategy, and a process. It’s how you navigate this challenge. How you make decisions.

It’s knowing what you can’t control—and what you can.

And that’s where you focus all your attention—your energy.

And most importantly—response is infectious. It creates momentum. It sharpens clarity. It empowers action.

It’s a response culture that fully embraces NGS, precision treatments, and clinical trials.

Here’s What Response Looks Like:

✅ Know your diagnosis inside and out.
✅ Understand your biomarkers. Get NGS from the beginning to see every option.
➡ If you can’t, ask for help. The community, the foundation—we have specialised family friendly solutions for exactly this.
➡ This is at the heart of our OPR initiative—patient-led, patient-first, patient-centric and family-friendly.
➡ Empower the patient, increase survival. Empower their community—exponentially increase survival.
✅ Engage early—don’t wait for treatment to fail before seeking trials.
✅ Surround yourself with people of cholangiocarcinoma-specific expertise, experience, talent, and great character.
✅ Never stop asking questions.

Response is the difference between working on surviving and simply receiving care.

Because this cancer generally outpaces care.
But it will have difficulty outpacing a well-executed response.

---

Q6: What’s the Biggest Barrier to Progress in Cholangiocarcinoma?

Steve:

Complacency. And a lack of expertise where it matters most.

Cholangiocarcinoma is increasing rapidly, yet it’s still considered “rare and unbeatable.”

I think being addressed as rare creates a false sense of comfort, it kills momentum. It limits creative persistence in the clinical setting. It slows research, funding, and innovation.

This is a cancer that doesn’t have the luxury of complacency or waiting.

So instead? We must lead. We must inspire. We must galvanise. Until our efforts demonstrate value and force a rethink.

We can’t afford to waste precious energy, resources, or time lobbying for what isn’t being done. Instead, we focus on what we can do—and we do it relentlessly.

Because momentum isn’t built by criticising what’s missing—it’s built by creating  and leading what’s needed.

Here’s the Reality:

• Clinicians are highly skilled. They diagnose, apply standards of care, follow best practices.
• But they’re not as adept or equipped to prepare patients for the challenge of cancer – this mostly occurs outside the clinical setting, but has great impact on the clinical setting.
• The great majority of Patients aren’t equipped. They aren’t empowered within the diagnosis process.

And because of that, they can’t contribute meaningfully to their own survival.

• The other issue? Disjointed and disconnected efforts.
  Research, pharma, clinical practice, and patients operate in silos, often competing for the same research dollar.
  No integration. No shared strategy. No progress where it matters most – patient survival

That’s Why We’re Building Effective Professional Communities.

• Bringing together expertise, experience, and patient insight.
• Unifying knowledge across research, pharma, and clinical practice.
• Embedding the patient voice—where it belongs.
• Ensuring that the expertise gained from lived experience is blended with professional expertise and innovation.

Because that’s how we drive real, scalable change.

Q7: What Do You Say to Newly Diagnosed Patients?

Steve:

Most patients reach out to me by phone or messenger.
By the time they do, they’re often despondent—exhausted from navigating the conventional pathways, drained by emotional stress, and out of options. Their caregivers and families are equally overwhelmed. Many of the best opportunities have already passed them by.

My first step is always triage.
I help them regain their balance. I calm them, reframe their thinking, and give them direction and purpose.

Then, we assess.
I audit their entire pathway—what they know, what they don’t, and, most importantly, what’s been missed. More often than not, critical opportunities were overlooked. Sometimes it’s a personality clash with a doctor that derailed progress. Other times, it’s a health system under stress—especially in hospitals that don’t handle high-flow cases of cholangiocarcinoma.

Cholangiocarcinoma demands a high-flow medical environment to maximize survival.
This is non-negotiable.

The First Four Questions Every Patient Must Answer

1️⃣ Where is your primary tumour?

• Have you had your tumour biopsied and molecularly profiled?
• Do you know your biomarkers and mutations?

2️⃣ Can you have surgery?

• Have you discussed with your surgeon whether surgery is possible?
• If not, have you asked what must happen for surgery to be an option?
• What can you do to improve your eligibility?

3️⃣ Does your medical team have specific, high-flow experience in cholangiocarcinoma?

• Knowing cholangiocarcinoma is not the same as having expertise in treating it.
• How many cholangiocarcinoma patients do they treat per week? Per month?

4️⃣ Have you sought a second opinion?

• Second and even third opinions matter—surgery is the only known curative option.
• Leave no stone unturned.

If the answer is no to any of these, we start there. Because every missed detail could mean a missed opportunity.

These questions give me a clear overview of their understanding, knowledge gaps, and potential opportunities.

I give them tasks and steps to complete.
Because steps create focus.
Focus replaces chaos with clarity.
And clarity leads to effective action.

But beyond the questions—my role as an experienced patient is simple:

I help them help themselves. This is an important feature.

Next is the mental reinforcement:

You cannot control that you have cancer. That part is done.

But you can fully control how you respond.
This thinking is deliberate and practiced yet must become your new normal.

Most importantly—don’t assume anything, assumptions undermine the effort.

• Become the best patient you can possibly be.
• Be a critical thinker.
• Be creatively persistent.
• Be open-minded.
• Be willing—without conditions.

Because if you remain open to this way of thinking,
opportunity will always have a pathway to you.
It will help you see possibilities you didn’t see before.

---

Q8: What’s Next? Where Do Newly Diagnosed Patients Go From Here?

Steve:

Three things:

1️⃣ Order your Free Patient Navigator Journal

• Follow the steps—it breaks the overwhelming challenge into manageable pieces.

2️⃣ Join the Patient and Caregiver Community

• This is a team of patients like you. It’s a place of strategy, experience, and support.
• The fastest way to learn is from those ahead of you on the same path.

3️⃣ Find a Patient-Endorsed Medical Professional

• High-flow expertise in cholangiocarcinoma makes a measurable difference.
• The right team is a life-or-death component of your decisionmaking.

4️⃣ Register for a Mentor

• Someone who has been exactly where you are.
• Who can help you see the opportunities you might miss?

5️⃣ Sign up for our CCA Email Newsletter

• Stay updated with the latest research, trials, and strategies.

Newly diagnosed patients & caregivers: Because we are a team in the same boat. We each must pick up an oar and row. We will help you help yourself. But you must learn to row. We are in this together.

---

Closing Thoughts

You cannot control that you have cancer. That part is done. But you fully control how you respond. If you can embrace this it will reshape your perception of cancer and how you approach it.

---

Ready to Take Action? Here’s Where to Start:

✅ Order Your Free Patient Navigator Journal
✅ Join the Patient & Caregiver Community
✅ Find a Patient-Endorsed Medical Professional
✅ Sign Up for the CCA Email Newsletter

This is the roadmap. The first step is yours.

---

Visit Steve’s Personal Website to see the complete picture 
www.steveholmes.net.au

Light Australia Green is Celebrating World Cholangiocarcinoma Day